When a Mother Is Blamed for Her Child's Unusual Illness

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On a tape recorded at a far-off foster home, 8-year-old Aaron Storck strums an out-of-tune guitar, and in a sweet high-pitched voice sings of his longing to be home again with a mother who has devoted herself to his continuing medical care.

"God, please help get me home to my mother, my sisters and my brother," he sings sadly, tunelessly.

With tears in her eyes, Aaron's mother, Ellen Storck, listens to the tape as she tells her side of an unusual custody battle that turns on the suspicions, blame and recriminations sometimes directed at parents of children with unusual medical problems.

Ms. Storck stands accused of what she says is the most terrible of crimes: fabricating or causing the illnesses of her youngest son, including a mysterious breathing disorder that required her to keep him tethered to a heart and breathing monitor every night for four years.

To the doctors at Schneider Children's Hospital at Long Island Jewish Medical Center in New Hyde Park, Aaron's condition was a case study of Munchausen's Syndrome by Proxy, a rare psychiatric disorder in which parents, mostly mothers, fabricate symptoms or cause unusual illnesses in their children -- not necessarily to harm them -- but rather to get the attention the parents crave from doctors.

After the doctors at Schneider reported the case to child-welfare officials, Aaron was placed in foster care pending a formal hearing later this month. His mother can see him only once a week in a supervised visit at a child-welfare office.

To Ms. Storck and her supporters, including parents of other medically fragile children, it is all a bizarre and terrible mistake, a witch hunt in which doctors, armed with circumstantial suppositions rather than hard evidence, blame mothers for the unusual medical problems of their children.

"I worked my life around Aaron and his illness," said Ms. Storck, a 40-year-old single mother with four children. "It took time learning to accept and live with that monitor. Now they are saying I caused everything. This has been a real horror."

Maggie Webber, a parent of a severely retarded daughter, and a member of a group of parents of chronically ill children, said that the case was terribly frightening to other parents of troubled children because "we all are so vulnerable."

"Suddenly when you have a sick or disabled child," she said, "you are under a microscope and everyone starts to judge you as a parent."

Doctors at Schneider Children's Hospital, who reported the Storck case to child-welfare authorities, declined to discuss the case because of the pending hearing. But child-welfare officials in Suffolk County say that the breathing disorder was detected only when Ms. Storck was present, and that she reported two false alarms at the hospital when Aaron was on a monitor.

Hundreds of cases across the country have been reported since the syndrome, named after Baron von Munchausen, an 18th-century German aristocrat with a legendary reputation for telling tall tales, was first identified 15 years ago.

The condition, which often involves symptoms that, like Aaron's, defy diagnosis, is regarded as very difficult to detect and prove. The mothers involved, experts say, are exceptionally devoted to their children, unusually supportive of their doctors and capable of convincing denials.

"They appear to all the world as the most caring parents, while they are poisoning their kids, or suffocating their kids," said Dr. Herbert Schreier, chief of psychiatry at Children's Hospital in Oakland, who is working on a book on the syndrome.

In a 1987 Munchausen case in Westchester County, a family court judge concluded that a mother created an illness in her 9-month-old daughter by feeding her laxatives. Despite the finding, the child was permitted to remain in the home under supervision while the mother underwent therapy.

To her friends and supporters, Ms. Storck is a model mother who gave up regular jobs and slipped deeper into poverty because of Aaron's chronic breathing problems. Sleep Apnea Diagnosis

Aaron's first medical problems surfaced when he was less than 2 months old, in what his doctors described as a "near miss" with sudden infant death syndrome. His mother said she had found him in his crib, pale and blue in the face, and had shaken him, until he cried.

Tests showed that he suffered from sleep apnea, a condition in which a person stops breathing for short spells. He was monitored at home, until the condition disappeared when he was 10 months old.

But when he was 4 years old, the apnea returned, two nights after he had undergone surgery for appendicitis. While sleep apnea in children is often caused by obstructions like tonsils, no such condition was found in Aaron, and doctors were unable to explain the cause of the condition.

Night after night, Ms. Storck, acting at the direction of Aaron's pediatrician, hooked him up to a monitor in her bedroom. When an alarm sounded, indicating a pause in his breathing or a lowered heart rate, she would shake him until his breathing returned to normal. Some nights the alarm rang eight or nine times. Series of Hospitalizations

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Aaron was hospitalized for other ailments, including bouts of pneumonia as an infant and an unusual bone infection in his pelvis this past spring.

Then last July, Aaron was to be hospitalized for two days at Schneider for what was to be routine dental surgery to treat abscesses in his gums. The procedure was performed in the hospital rather than a dental office out of a fear of complications from his breathing condition.

But, rather than being discharged as planned, Aaron was kept for several days in intensive care, as a team of doctors, a psychiatrist and social workers, began questioning Ms. Storck, doubting that Aaron ever had apnea at all. Eventually when she demanded that he be discharged, she was told a complaint had been filed charging her with neglect, and he could not leave.

Ms. Storck said the questions arose only after she vehemently rejected an extreme recommendation by one doctor, that a tracheotomy be done on her son to safeguard him from dying from the apnea. Confronted by Doctor

Soon after, she said, the same doctor confronted her with the conclusion that he was "110 percent certain" that Aaron never had apnea and that she had caused his medical problems.

After an eight-day preliminary hearing in Suffolk County family court in Hauppauge this summer, Judge David Freundlich ordered that Aaron be removed from his home, pending a formal hearing scheduled to begin in the last week of October.

The ruling was issued despite reservations by Aaron's family pediatrician, objections from a legal guardian appointed to represent the boy, testimonials from several mental-health workers who had treated the family, and a psychiatric report that found Aaron to be a "remarkably intact little boy."

Instead Judge Freundlich accepted the diagnosis of Munchausen's Syndrome by Proxy, as presented by a doctor from Schneider, and in many ways Ms. Storck fits the pattern of such cases remarkably well. Deeply Attached to Children

Like many mothers in these cases, both side acknowledge, she is deeply attached to her children, had medical training, completing most of the work toward a nursing degree, and has a complex connection to the medical world -- Aaron's father, is an internist whom she never married, and who initially denied paternity.

One telling point made by doctors at Schneider and the county -- now that Aaron is in custody, the apnea has disappeared. But Ms. Storck said that the condition was always intermittent, and had disappeared before she was accused of any wrongdoing. Now she worries that it could come back unexpectedly while Aaron is in foster care and kill him.

Robert A. Bruno, a Hauppauge lawyer who has been representing Ms. Storck without pay, attributes her plight to overconfident doctors, in search of exotic and fashionable diagnoses, and courts, poorly equipped to handle complex cases of medical ambiguity, that unduly favored the hospital's expert witnesses.

He said that the hospital never showed how Ms. Storck could have caused the infections and other medical problems in her son without a trace, especially since Aaron, older than most children involved in Munchausen's Syndrome by Proxy, repeatedly denied being stuck with syringes, or mistreated in any way at home. 'She Is a Victim'

"I think she is a victim of some wild people who are professionals from a very renowned hospital," he said.

Mr. Bruno and supporters of Ms. Storck are trying to raise $4,500 to pay for the transcript of the preliminary hearing to aid in her possible appeal, and additional money to hire medical experts to testify on her behalf at the next family court hearing. He has asked Judge Freundlich to disqualify himself from the case.

Gary Rosenthal, who prosecuted the case, acknowledged that the charges in the case were "bizarre" but said the hearing was fair. "The judge heard everything and made his decision," he said.

Andrea McKenzie, a court appointed law guardian, took a middle ground in the case, recommending that Aaron be permitted to return home under intensive supervision.

"While she may have exaggerated the symptoms," she said, "she may have done nothing wrong in her mind. I'm not even sure that the child ever really suffered."

A version of this article appears in print on October 11, 1992, on Page 1001041 of the National edition with the headline: When a Mother Is Blamed for Her Child's Unusual Illness. Order Reprints|Today's Paper|Subscribe